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New symptoms

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karen56071
karen56071

I'm new to the group but was very active in it 15 years ago.  I had left HFS for 17 years in my 40's and 50's.  I had a MVD of the 7th cranial nerve at UPMC  in Pittsburg in 2001 with very good results and no complications.  I began having a raspy voice about 5 years ago and saw multiple doctors who didn't know the cause.  Recently my voice has become very weak and it's hard for me to speak.  I saw a voice specialist, who did a scope of my voice box.  It showed the left side of it is no longer functioning.  An MRI was immediately ordered and showed a mass in the base of my brain, where the MVD had been performed.  A consult with a neurologist was suggested and the one I saw was pretty sure the mass was granulation, or scar tissue, around the surgery site, which could be the cause of the disfunction of my voice box on that side.  It may or may not get larger and cause other nerve disfunctions.  But the only thing I could do is to have another MVD to remove the scar tissue.  I thought I was home free after 10-15 years without symptoms but it looks like I'm stuck with this monster for the rest of my life.

i would be glad to answer any questions about HFS, as I've lived with it for many years.

0 likes, 9 replies

9 Replies

  • joanne19156
    joanne19156 karen56071

    Posted

    Hiya ive not had a diagnosis of yet but i'm guessing I've got either hemefacial droop or hemefacial spasm since last july it's quite painful at times has it makes my neck vein bulge too I'm at a loss has to what to do seen neurologist stroke doctor and I'm finally on heart tablets for my I regular heart beat and blood thinners too
    • joanne19156
      joanne19156

      Posted

      I'm in England and I guess the medical profession seem to think if they can't find a cause it's all in your head but these are stroke symptoms mini strokes just be hopes I don't have a major one to make me all together disabled
    • Roseann
      Roseann joanne19156

      Posted

      Hi Joanne, I'm also in the UK.  Sorry to hear about your symptoms and possible diagnosis of Hemifacial Spasm (HFS).  HFS normally starts with eye flutters then progresses down the face with some 'pull' upwards from the mouth (sometimes with tonus type spasms which kind of freeze the face for a while).  It can also affect the neck.  It definitely has nothing to do with stroke or mini stroke, and is normally a consequence of a vein or artery compressing the 7th cranial nerve on one side or the other.  If you are able, it might be worth going to see one of the better neurosurgeons in the UK (I saw Nik Patel at the Spire Hospital in Bristol) on a private basis.  At least he could give you a definite diagnosis and an MRI scan to rule out other possible causes.  This would cost about £750 so I realise it may not be possible.  If you stick with the NHS then it's best to push for an MRI scan.  HFS is not normally painful by the way - more debilitating and uncomfortable.  Pain is often associated with something different called trigeminal neuralgia.  

      Sorry if this is no help at all.  Hope you get the right diagnosis so that you can get the right treatment.

    • joanne19156
      joanne19156 Roseann

      Posted

      Hi roseann ive read that after a stroke you can get hemafacial spams I'm totally fed up of them thinking it's physicological it takes over my life at times and my speech
    • Roseann
      Roseann joanne19156

      Posted

      Dear Joanne, I totally understand what you're saying here.  Yes, it does take over your life and saps your confidence too.  My surgeon described it as 'emotionally blunting' and I thought that was spot on.  I think it can sometimes be a consequence of a stroke but more often it is as a result of a compression of the 7th cranial nerve.  It's well worth getting an MRI scan to be sure of the cause.  Some people choose to have Botox injections to stop the spasms - this can be very effective particularly if it is just the eye area involved.  Feel for you.
    • joanne19156
      joanne19156 Roseann

      Posted

      Hi roseann do you have whatsapp if so I could send you a pic how do I upload a pic on here its my mouth and neck that goes in to spasm it's quite painful at times and effects my speech making it garbled and slurred
    • Roseann
      Roseann joanne19156

      Posted

      Hi again Joanne, I don't think you can upload a photo on this site unfortunately and I don't do whatsapp.  I think the best thing would be for you to join the Facebook Hemifacial Spasm International Support Group if you are on Facebook?  There are so many helpful people there and it's easy to upload a video to the Facebook site - I am actually a technophobe and useless at such things of course!  If you join that site then you can also see videos posted by other people of their spasms - it might help you to know whether this is the same thing that you're experiencing.  The only thing that makes me doubt this is that you are getting pain with your spasms and it is not normal to have pain with HFS, even though it is a PAIN!  Hope this helps.  I have replied to your private message by the way.
  • Roseann
    Roseann karen56071

    Posted

    Hi Karen, I'm so sorry to hear of this unexpected complication of MVD surgery from so long ago.  I have heard of this type of granuloma but never one which affects the voicebox.  You must be so fed up, having thought that you'd gotten rid of HFS and its side effects.  May I ask whether this could have been detected earlier and whether you will go back to Pittsburgh to get things sorted out?  Really feel for you as you puzzle how to move forward once again.  I had surgery 3 years ago here in the UK and am spasm free by the way.
  • robert78247
    robert78247 karen56071

    Posted

    Hi Karen,My name is Bob and I am from Hamilton,N.J. When I saw UPMC,2001,the lights went on because your surgery in 2001 took place 1 year before mine  which took place in November of 2002.This actually was my 2nd MVD. The earlier one was attempted in Philadelphia,PA ,but unfortunately the desired results were not achieved.That MVD was attempted in July  of 2002,and 3/12 months later in November of 2002,the second was successfully performedNot really a good way to go,but the alternative of doing nothing was not really a choice..When I sat down with the team of doctors to discuss all possible outcomes,both good and not so good,they advised me that they could promise me symptomatic relief of my hemi facial condition to the tune of 66% to 99% .I knew what 99% would look and feel like,but I forgot to have them define 66%. Anyway, after my second MVD, I could only whisper because one of my vocal cords was paralyzed.That side effect eventually resolved itself,but I have had a mildly raspy voice for more than 13 years.If I attempt to eat popcorn.it never fails that that a small piece takes up residence on the right side of my throat and I need to cut up an apple into small slices,ingest it and hope to dislodge the culprit.With respect to the scar tissue issue,my surgeon at UPMC told me that on a scale of 1-10 I was an 11! In that 3/12 month span of time between surgeries there was a tremendous amount of build up which the good doctor was able to eliminate.Since I was considered a "redo" ,I oftentimes wonder what my real outcome would have been had the surgery been completed at UPMC the first time.(My health insurance denied my original appeal,stating that they had someone "in house" who was credentialed and could perform the surgery in Philadelphia).A Ricola cough drop from time to time seems to help the throat

     on especially raspy days.My wife works for a doctor and he said that when it comes to multiple surgeries,don't take the anesthesia too lightly because as time wears on, the long term side effects have a tendency to catch up with you.Over the years,I've experienced the reappearance of some of the earlier pre-op  symptoms ,some for as long as a week,but they all disappeared ( I guess this was the definition of the  66% bottom range for the relief of symptoms). Well, I wish you well in your decision making process with respect the removal of the newly formed scar tissue.I tend to think that the severity and intensity of your symptoms will ultimately point you in a direction and I truly hope that you have a very successful resolution to the problem because I,myself , have been there,done that and bought that  tee shirt!Good Luck.

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